Myotonia congenita

Does anyone out there have myotonia congenita? It's a relatively rare neuro-muscular disorder that basically "locks" a muscle contraction, making movement impossible for a couple of seconds. The affected person looks almost frozen for a moment, then the muscle contraction relaxes and allows for movement. It's not a constant problem, but it worsened when the weather is cold. As the muscle warms up, movement is easier. Don't laugh, but it's the same condition as the "Tennessee Fainting Goats", if you've ever heard of them.
I'm the oldest of 3 girls, and my youngest sister also has this disease. You'd think we wer very athletic, as the isometric contraction actually builds muscle. My neurologist says in his 30 years of practice, he's only seen this disease in 4 people, including me and my sister.
I have to be extremely careful of the medications that I take, as some will worsen the contractions, even of the heart.
Myotonia congentia is an orphan disease, so not much is done in progressive studies. Quinine used to be the only drug administered, but it's off the market now, I believe. It's also known as Thompson's disease, or another form called Baker's disease.
I'm just curious to see if anyone else out there has this disease, and would like to compare notes.
Thanks,
Taurus251